6. Set up a voluntary registry for donors and offspring.
The Canadian government must also put an end to the growing black market in human eggs by enforcing the AHR Act's ban on payment to donors for eggs, sperm and embryos (while allowing reimbursement for genuine expenses resulting from the act of donation).
Although the focus will be on Canadian legislation, we welcome input (in person, as well as by phone, email, mail, fax) from those in other countries, and lessons learned at this meeting should be transferrable elsewhere.
Background
1. Donor Anonymity: A growing number of countries have ended donor anonymity for future donors, including: the United Kingdom, the Netherlands, Sweden, Norway, Iceland, Finland, Switzerland, Austria, New Zealand, and the states of Victoria, New South Wales & Western Australia. A ruling of the German Constitutional Law court leads legal specialists to assume that offspring will be granted similar rights there. These countries have recognized that donor anonymity:
violates the human rights of offspring.
is the state-sanctioned creation of second class citizens who are denied what the rest of us take for granted: knowing who we are and who we are related to.
Not being able to know these things can affect offspring in the following ways:
impair their ability to protect their own health and that of their children in an age when the impact of genetics is increasingly apparent.
hinder their process of identity formation.
cause them grief and pain.
2. Safeguard Existing Records: While the AHR Act requires that future donor records be kept for some (as yet unspecified) period of time, it makes no provision for past records currently stored in sperm banks, clinics and doctor’s offices. As a result, there is a real fear among some parents and adult offspring that these records will be destroyed or lost, either by accident or design, or as the doctors who performed the inseminations retire and die, especially since medical records need only be kept for 6-10 years (depending on the province). This leaves offspring little hope of ever finding out even non-identifying social or medical information about their donor, a loss which could affect both their own health and that of their children. There are currently explorations underway to determine whether a challenge is possible under Canadian human rights legislation to prevent this loss and destruction from happening.
3. Mandate Reporting Of Live Births: Required in order to obtain an accurate number of births per donor; estimates suggest that only 40% of births are currently reported.
4. Limit The Number Of Births Per Donor: Limit the number of families created by any 1 donor to 10 as is done by many other countries. Currently, Canada has no limit, only industry guidelines based on population, which can allow hundreds of births per donor in large metropolitan areas. Moreover, there is nothing to prevent a donor from visiting more than 1 sperm bank or clinic, with the result that some donors have dozens, perhaps even hundreds of offspring, thereby:
raising the risk of consanguinity (inadvertent sexual relations between half-siblings, or between an offspring and their donor).
lessening the chance that the donor will be willing to make themself known to their offspring.
making some offspring feel as though they are a manufactured product off an assembly line instead of an individual human being.
5. Update Donor Medical History: Unless donors are required to update their family medical history on an ongoing basis, the information is only a snapshot in time, gathered at the time of donation, when the donor and their parents are relatively young, and before major health issues have emerged. We also need a way for families to be advised of significant changes to a donor’s medical profile, or when genetic problems turn up in any of the children, in order that all parents, as well as the donor, can better protect the health of the children born to them.
6. Voluntary Registry: To enable those who donated, or were conceived, to share information with each other, and with half-siblings. Such registries have been established by governments in other countries, including the UK and the state of Victoria, Australia. There has also been a huge interest in the Donor Sibling Registry, a charity set up in 2000 in Colorado, USA, by Wendy Kramer, a mother via anonymous sperm donation and her son, Ryan. As of June 2008, the DSR reported that:
Total number of registrants, including children = 20,000+ (including 500+ Canadians). Several thousand more check the site regularly, but are not ready to post their information.
Matches have been facilitated between 5,000+ half-siblings (and/or donors), including 200+ among Canadians.
In 2007, some 90,000 individuals – from 143 countries – visited the DSR website. Every time there is a news story about the DSR, the site is flooded with new registrants, including many Canadian offspring, parents and donors, all looking for each other. Unfortunately, many Canadians don't realize that their vials originated from Fairfax, CCB or Xytex sperm banks, probably because they weren't told by their doctors/clinics; in some cases, they weren't even given a donor number. As a result, they sign up and post on the DSR under the name of their doctor/clinic, which makes matching (with the donor and half-siblings) even more difficult.
The DSR, as well as research, clearly demonstrates it is a mistake to think that genetic connections don’t matter to offspring, parents and donors, or that all donors want to remain anonymous. Moreover, the fact that genealogical research is reported to be the second biggest use of the internet makes it clear how important it is to many people to find out about those with whom they share a genetic connection.
There is no need for parents to fear they will somehow ‘lose’ their children; offspring are not looking for replacement parents any more than adoptees seeking reunions with their birth family are. Rather, they simply want "to find the missing 50% of the pieces of the puzzle that make up who I am". Instead of asking "Who does this child belong to?" we might better ask, "Who belongs to this child?"
